So if you read my last post about Gannon, you know we went down the the University of Iowa yesterday. This post won’t make much sense unless you read that one so check it out here:
We left about 6:40 am for a 9:00 appointment. First was our appointment with the urologist.
I brought up all of my concerns, why I thought he might have prune belly, we talked for a long time. He had a resident with him and she was very attentive as well.
There are several yellow flags that aren’t enough of a problem to hand out a diagnosis of prune belly. The number one reason his because his kidneys appear normal on imaging. Yes his bladder is consistently large. He does seem to have some sort of abnormal ab muscles and his testicles have not descended. But none of these symptoms are enough to cause a diagnosis. He went through each set of imaging with me and explained why he thought this was gastrointestinal tract related. This was helpful. He said maybe it could be a “variant” of prune belly but to use that as a last resort diagnosis AFTER he sees GI. We will set up a surgery with them in the next few months.
On to GI. Our main concern with GI is that Gannon cries when he poops and why does his belly look like that?
GI thinks it still could be prune belly because if it is a variant their kidneys can appear normal but the distended bladder would be enough for a diagnosis.
GI ordered a “lower GI series” which consisted of Gannon being strapped down, a catheter inserted into his rectum and fed through the large bowel while administering contrast. Lots of contrast.
The staff were amazing. They did such a good job of explaining and taking care of Gannon. It was hard to watch but they made it okay.
We went to lunch after that while we were waiting for the images to result. Isn’t this a beautiful hospital?
In the meantime Gannon was…expelling the contrast in large quantity. I went to change his diaper, he started crying/pushing and PROJECTILE poopy contrast all over me and the bathroom, my pants, shirt, shoes, the floor, the changing table – everywhere.
I stood there in shock for a good 3 minutes trying to figure out what to do. I wiped off as best as I could – I used all my wipes and I asked the receptionist to put the bathroom out of order until housekeeping could come 🤦♀️🤦♀️
Anyway, here’s what the lower GI study showed:
Gannon’s anatomy of his large bowel is abnormal. There’s lots of extra bowel, they call that “redundant.” Instead of the colon going to the left it goes to the right. He had monstrous amounts of stool his his colon despite being regular. His anus also appears abnormal. Possible prune belly. Possible Herschsprungs. Possible Chronic pseudo obstruction. Possible anus imperfecta. At this point anything is possible.
They consulted surgery who wants us to come back on Tuesday after the surgeon review his case. Likely whatever Gannon has needs to be fixed or diagnosed with surgery. So that will be 3:20 pm on Tuesday next week.
They listened to me. They believed me. The validated my concerns. They took action. They got other departments involved. This is not sad news – this is wonderful. To hope they would tell us “he’s just fine” is not what we want right now. We know there is something wrong and we want answers which I think we will get much closer on Tuesday.
Thanks to all who have reached out. I’ll let you know what I know when I know it.